Showing posts with label occipital stimulator surgery. Show all posts
Showing posts with label occipital stimulator surgery. Show all posts

Tuesday, July 7, 2009

Productive Day


Working my way Back to Eight Hours

A good day at work, got several goals accomplished. Almost feel like my old self again. Didn't work eight hours, but worked more than yesterday. I want to be up to eight hours daily by the end of this month.

The incisions are healing and itching from the occipital stimulator surgery. The hives are still there from the allergic reaction and itching. I wasn't supposed to change the dressings but I did anyway - I couldn't stand the old icky things hanging on me. I wasn't supposed to wash my hair but I figured a way to do it - thank God for Glad Press'n Seal Wrap! I wrapped my neck dressing with Press'n Seal and then very carefully washed my hair. I was glad the Glad Wrap did the job!

I feel like a bear - I need a tree that I can put my back against and itch. I find myself looking at things like corners of doors, and thinking I could itch my back on that! Hoping much of the itchiness will be gone when the stitches are out. And yes, they are stitches, not staples. Nicely and neatly tied stitches!

Can't wait to take a shower. I feel grungy. Ready for the stitches to be OUT. Grrrrrrrrrrr.

Wednesday, July 1, 2009

Permanently Electrified


Installation Complete

Have returned from the Cleveland Clinic where I received my new ANS occipital stimulator from St. Jude Medical and their occipital stimulator/migraine study. In keeping with St. Jude's request, I won't say if I got a "real" stimulator program or a "bogus" stimulator program until the logging portion of the trial is complete in 12 weeks. They told me the stimulator is the same, they just give it programs that don't work, or programs that do work. After 12 weeks all the stimulators are programmed to work. Since the stimulator feels "buzzy" when it works, you definitely know if you have a working one or not, but the study coordinator for Cleveland Clinic can't know. I have 4 programs which could or could not work, that I can rotate using the control pad and paddle.

I have to go back again next week on the 9th. This is financially challenging. Not sure what kind of flights, etc., I will be able to find. I definitely didn't feel much like travelling today and had not planned to, but came back a day early because I wanted to save the extra day's hotel money for the trip next week.

According to the St. Jude's representative, the study is now closed to new participants and is in the "wrapping up" phase. They hope that the study will be positive enough that insurance companies will no longer consider it investigational and will pay for it as an alternative for patients with intractible headache conditions.

My brother who went with me said there was a lady there who was finishing up her year of the study. She had gone from multiple disabling headaches a week to three mild headaches a month. Hoping for similar results myself by the time the year is up. I guess you can tell if I have a working model or a non working model by the number of "Bad Headache Days" I have in the next three months!

I have a neck brace to wear for a while to restrict neck movement, and am restricted on movement and what I can pick up, etc. for a while too! The battery pack placement is in my right hip and so far is the most painful part of the operation. My puppy Augie was quite interested in the neck brace - I think he thinks it's some kind of dog collar! I don't recommend travelling so soon after the operation, but I really didn't have much choice. I hope hope hope that this works for my headache and that if it does others will be able to get their insurance companies to pay for the operation because of this study.

Saturday, June 27, 2009

Getting my Golden Helmet of Mambrino



Hope I'm not Tilting at Windmills!

Will be leaving in wee hours tomorrow to drive to St. Louis and catch a flight to Cleveland. Fatigue finally won out over economy, so I compromised with a four hour dive and an hour or so flight. My younger brother John is going with me - my poor older brother Phil has a bad back and it about put him down for the count when he went with me the last time.

I thought of this song from the Man of La Mancha where Don Quixote mistakes the barber's shaving basin for a legendary golden helmet which will make him invincible! I hope I am not as mistaken as the great Don, and the occipital stimulator will be the real golden helmet, and not just a wash bowl. If you hear the cuckoos calling from the cuckooberry tree, please let me know! I definitely hope I have a noble heart and the stimulator will make me impervious to The Headache!

DON QUIXOTE
Hand over that golden helmet!

BARBER
But this is a shaving basin!

DON QUIXOTE
Shaving basin! Know thou not what this really is?
The Golden Helmet of Mambrino!
When worn by one of noble heart, it renders
him invulnerable to all wounds!
I am hoping for a safe trip and an excellent result from my surgery Tuesday. Won't probably be posting for a few days so everyone out there - stay well!

Thursday, June 4, 2009

Occipital Stimulator Surgery Scheduled


The Turtle Migration Has Started

Finally I am scheduled for surgery to implant the "permanent" occipital stimulator. I have to be in Cleveland June 29th for presurgical testing/interview and the surgery will be performed June 3oth. Now if I can just get the working stimulator instead of the dud stimulator!

The annual turtle migration has started, with a big old snapping turtle getting all tuckered out in the road in front of the house. His shell was a little over a foot across, and I've heard that they grow about an inch a year, making this a 12 year old turtle. Not sure how long they live - tortoises live long lives, but I don't know about turtles.

My brother and I got him into a garbage can (my armadillo trapping experience came in handy) where he couldn't escape and liberated him down at the creek. It was a stinky ride the mile or so to the creek, as Mr. Turtle decided to go to the can in the can so to speak. He was quite snappy but soooo tired he just couldn't get to where he wanted to go. He seemed a bit dehydrated also.

We got him to the creek and my brother gently scooted the turtle out. Mr. Turtle got in the water so quickly I didn't have a chance to get his picture on shore - just barely got a picture of the bubbles as he headed downstream. Mr. Turtle paused and looked back at us like "Thanks" before he went under on his way to the good life at the bottom of the creek. I won't be going wading barefooted in that section for awhile!

I was able to work today. Exciting times - going to build some education materials for online classes! I LOVE learning new software. Also part of the conversion data is ready for me to work on so I get to flex some brain cells! The bosses were so nice about my scheduled surgery. I think I won the boss lottery when I got this job, although I have to admit my old boss Lester would have fit right in.

I had my followup appointment with my oncologist yesterday morning and what I expected to be a short report - yes you don't have any cancer, turned into yet another MRI ordered and more appointments. I was told once more that radiation therapy could not be the cause of my pelvic pain and other problems I have from ennervation in that region. I said I would be very happy if radiation therapy was not the cause of my pain, because then there would be something I could do about it, but everytime I get past this point with a specialist they then decide that yes, radiation therapy is the cause, and no, there isn't anything they can do. Maybe this time will be different and I'll actually get some treatment.

On a sad note, my Aunt Nadine died this morning. Nadine was about four years older than my mom, making her in her early 80's and had been very frail for the last few years. My mother came from a family of 14 children, and now there are only two of them left - my mom and her younger brother. Aunt Nadine had a close and loving family and we all will miss her. She was a strong woman and had one of the most beautiful vegetable gardens I had ever seen. She could grow anything - had a green thumb for sure - and made wonderful blackberry cobbler, homemade noodles, and ham and beans. I think she will be gardening in heaven, right alongside her husband Guy. I'll be driving my Mom back home (even after all these years its still home in my mind) for the funeral this weekend.